The Journey to Normal: Our Family's Life with Autism

Excerpts from the book – (2% indicates location in the Kindle version of the book, instead of page numbers).

< Excerpts from the Preface, by I.D. Johnson >

2% No one ever expects their first child to be born with differences. As a mother, it is certainly something I considered, something I worried about, but never something I actually expected to confront.

3% I work as a Reading Interventionist and a Response to Intervention Coordinator in elementary school. Every day, I work with students who struggle academically and/or socially. I have had experiences with children with all sorts of disabilities, to intellectual disabilities, to autism.

< My Thoughts > ….because of so many differences, one may not recognize differences in their own child.

Usually parent and teacher observations of a child’s differences from their peers overlap. In other words, what the parent sees at home, the teacher usually sees in the classroom. Autistic-like differences, such as: no eye contact, no peer or parent interaction, no interest in the activities of others, using gestures instead of language to have needs met, preference for sameness and rigid routines.

3% Hopefully, through my experiences I can show you that it is okay to have some doubts about whether or not your child needs assistance, and I can show you why it cannot hurt to have your child evaluated…

The other reason I decided to write our story down is because I believe Sophie’s story is one of hope and triumph.

< End of excerpts from the Preface, by I.D. Johnson >

< Excerpts from the Introduction, by I.D. Johnson >

5% …I am thankful for the lessons we have learned on our Journey to Normal. This book is written in two sections. Most of the content in both sections originally appeared on my personal blog. It has been modified and elaborated upon. The first section primarily comes from a six part series I wrote several years ago, which was also entitled, “The Journey to Normal.” I have filled in details…added in information since the blog posts were written over two years ago.

In the second part of the book are stories from our life. While the first part is more of a synopsis of how we came to discover Sophie has autism, the second part will let you know a little more about what our life has been like living with autism.

< End of excerpts from the Introduction, by I.D. Johnson >

< Excerpts from, Part one: Our Journey So Far, by I.D. Johnson >

6% There’s something not quite right… There wasn’t a clear point in time that I can look to and say, “that’s when I knew.” And even now, there’s been some speculation that she may not meet the criteria for autism in a few years, if she continues to make progress at the rate she is currently, which begs the question: How can she be autistic now but not be later? There is no cure for autism….

< My Thoughts > “There is no cure for autism….”

Recently, some autism organizations have dropped certain terms from their mission statements and/or from their references. Words that imply that a person on the autism spectrum is not ‘normal’ or valued. Words like, ‘fix’, ‘cure’, ‘struggle’, ‘hardship’. But words like ‘disorder’ are still found in many medical references. Some feel that this is the new civil rights movement. Others feel that children on the spectrum will become independent with educational and behavioral support.

6% Discovering your child may be autistic often comes in the most subtle ways. It’s in the little things. When your two-year-old doesn’t look at you when you enter a room. When your three-year-old still isn’t speaking in intelligible, complete sentences. When everyone else’s children are playing together, and she is under a tree, digging for who knows what. When a frustrated teenage swimming instructor says, “Lady, I think there’s something wrong with your kid.” That’s when you start to realize…

When Sophie was a baby and even a toddler, we would enter a restaurant and she would talk to everyone. I used to say she never met a stranger. She was the social butterfly I assumed my child would be. …at 12 months, Sophie was exactly what I thought she would be.

And then something changed.

< My Thoughts > when change occurs… it might be autistic regression.

Baird, et al. (2008) tell us that autistic regression is “Commonest in the second year of life and occurs in 15 – 40% of children with autism.” “Some parents report a very abrupt change in their child’s development and behavior, while others report a more gradual change.” These authors report that the regression may be identified as loss of ‘babble’ or ‘language’. Or, as ‘plateauing’ where the child does not go on to meet developmental milestones, according to their chronological age. “One feature of this autistic regression is that it occurs in the absence of a neurological event, such as an epileptic seizure.”

7% …it was a gradual realization, too…as it often is.

…at first I made excuses…I think most parents do.

…she chooses to ignore me because she is a little diva.

…she doesn’t want to play with the other kids because she is too sophisticated for them.

…she doesn’t speak in complete sentences because I always know what she wants…and I just let her get away with pointing.

…she was just a little different and that was okay. If the pediatrician wasn’t losing any sleep over it, I wasn’t going to either.

Then, Sophie started pre-school. The differences in Sophie were apparent immediately to the staff, particularly the director. …but some of the things they said Sophie “couldn’t” or “wouldn’t” do at school, she was doing at home.

8% The teachers were very concerned and my concern was growing by the minute. And yet, still, I waited. I was pregnant with Ariel, Sophie’s little sister. I was working a lot. These are the excuses I used.

Much as you want to know what is going on with your baby, you also don’t want to know. And if you don’t know if something is true or not, you can always hope that it isn’t.

I would oscillate between “there’s nothing wrong with her,” to “what in the world is wrong with her?” and, “why did God do this to me?” Finally, when Sophie was two-and-a-half, we decided to have her evaluated.

Her differences by then were very obvious. She was hardly talking. What she said was barely ever understandable. The little social butterfly had flown away and left me with an aloof, often completely closed off child.

Even though I could see of the differences between Sophie and other children her age, I was very sure they were going to tell me she was just a little delayed and she would be fine by the time she was three.

What they actually told me took my breath away.

9% The evaluation itself was conducted by a speech pathologist and a diagnostician. They talked to me about how sweet and beautiful Sophie was, how lovely our home was, and how we were all going to have a Merry Christmas.

Then they pulled out their charts and reports.

I was waiting for them to say they were sorry but Sophie just didn’t qualify for their services.

But of course, Sophie did qualify for their services.

10% In fact, of the four areas they tested in, Sophie qualified in two of them and almost a third. She was behind in her social skills, as far as interacting with other children and adults.

And then they threw the number at me that made me stop breathing.

…cognitively, she (Sophie) is eleven months behind. I had to ask for clarification. My child was very bright. She could sort objects by color. She could problem-solve like no other two-year-old I’d ever known…

10% The assessment they had administered was called the Performance Assessment for Language Students, (PALS). They admitted that the test was heavy on the oral language skills, and it is possible that she could be just fine cognitively, but the test indicated that she wasn’t.

They said that most of the scores were based on her (Sophie’s) ability to answer questions and sing songs, recite nursery rhymes, etc. I said, “But she can’t talk.” She was cognitively behind because she couldn’t sing “Twinkle, Twinkle, Little Star,” tell them her name or which picture was cookie.

< My Thoughts > “The assessment they had administered was called the Performance Assessment for Language Students, or PALS. They admitted that the test was heavy on the oral language skills, and it is possible that she could be just fine cognitively, but the test indicated that she wasn’t.”

As a teacher and student of what’s out there, I was surprised that the professionals administered the PALS test. I just seemed to me that there would have been more appropriate assessments for the first time out with a non-verbal child. Hmmm…

11% I still don’t know if they believed my child was really that far behind or if they understood that you cannot judge a non-verbal child’s intelligence based upon a verbal exam…

“She hasn’t developed her ability to communicate verbally.” “Yes, but why?” “Well, when she hears speech, she doesn’t understand how to process it.”

“I understand that. But what causes that?” “It’s some sort of developmental delay.” And so the circle continued.

At the time, it was very important for me to answer three questions. 1) What is wrong with my child? 2) What caused this? 3) How do we fix it?

< My Thoughts > “At the time, it was very important for me to answer three questions. 1) What is wrong with my child? 2) What caused this? 3) How do we fix it?”

One of the problems with the process of diagnosis, treatment, and intervention, as I see it, is the ‘disconnect’. As diagnosticians, the implication is that the parent should be pleased to get an autism determination which would provide services for the child. One of the problems is that there is very little, if any, regulation when it comes to testing and qualifying for programs. My advice is…Parents, do your homework!

As the mother, she wants to know the cause. Did she do something wrong? What can she do to correct the problem? As a teacher, she wants to know how to proceed with an appropriate intervention. As a community member, she wants to know what is available to her child and how to prioritize needs.

As a human being, she wants to know how to ‘fix it’. We humans are problem solvers by nature. When something seems broken or ‘off’ somehow, you want to fix it.

11% They were very understanding and assured me that everything was going to be just fine. She would qualify for speech and occupational therapy services.

We would have six month of therapy through Lifepath Systems until Sophie was three years old. At that time she would fall under the jurisdiction of the local school district, which I happened to work for.

11% Despite the fact that the PALS (scores) showed that Sophie was behind in cognitive and linguistic skills, neither of the professionals mentioned during this initial evaluation that they felt that she may be autistic.

12% Let’s face it, it’s a lot easier to get along in this world if you can speak and understand verbal communication. So, why would I want my child to try to navigate in life without those basic skills?

Of course I want her to continue to have all the amazing gifts she has. Sophie is extremely gifted in many areas, especially when it comes to math and spatial reasoning. I’ve literally watched in amazement as she has put together complicated puzzles quickly, just by glancing at the shape of the piece she needs next…she doesn’t even need a picture.

< My Thoughts > “I’ve literally watched in amazement as she has put together complicated puzzles quickly…she doesn’t even need a picture.”

Surprising talents and strengths are reported in studies of Meilleur (2015), state the prevalence of Special Isolated Skills (SIS). These are exceptional strengths or talents which appear suddenly, are somewhat of a mystery. Having SIS may be dependent upon exposure and materials available in the child’s environment. These strengths and talents also seem to increase with one’s age; and are more common in girls than boys with autism. Some SIS won’t surface until adolescence.

There also seems to be a genetic component, but some ‘performances’ may be the result of independent mechanisms. Mottron, one of the authors of this study believes that this is explained by the way the brain allows for or approaches tasks. She calls this a “regional cerebral synaptic response”, or how plasticity in the brain reacts to the environment or to an event. Some authors on the subject refer to the appearance and prevalence of these talents and strengths as a sort of ‘adaptive functioning’. Lots to consider here. Smiles.

20% The school psychologist who performed the autism evaluation was extraordinary. Of all the people I have met along this journey, I feel that she was the kindest.

21% I braced myself for the inevitable truth. Except she couldn’t tell me that Sophie was autistic. Because the evaluation did not conclusively demonstrate that Sophie was.

Sophie was borderline in three qualifying areas – Autism, Asperger’s, and Pervasive Developmental Disorder. It indicated that she may possible qualify as being autistic in the future, if she did not continue to make progress, but based on her age, they could not label her as being autistic, at that time.

I felt like this was a victory! I had fully expected to be told my child had full-blown autism…

22% Sophie’s teachers were convinced that she would benefit greatly from the autism unit at their campus, also known as the Structured-Teach Classroom or STC. I was afraid. I didn’t want Sophie in the autism unit. I didn’t want her labeled as autistic, particularly if she wasn’t. I wanted her to have good role models, typically developing role models, verbal role models. I was afraid she would stop making progress in that setting.

The school psychologist who had performed Sophie’s autism evaluation suggested that we look into hyperlexia.

It is not a stand-alone diagnosis, but it was possible this was part of Sophie’s gift.

Hyperlexia is the opposite of dyslexia. It has different forms, like all conditions, but it is generally characterized by an over-emphasis on a fascination with letters, letter sounds, numbers, reading, and the alphabet it general.

“This sounds like my daughter.” Unfortunately, very few people are familiar with hyperlexia and there is no “treatment” program for hyperlexia.

< My Thoughts > “…very few people are familiar with hyperlexia.”

Hyperlexia is when a child’s natural ability to read is far above what is expected for that age level. The trade-off is that the child often has difficulty with verbal skills and may even need to have everyday communication put in written form for better understanding. Some children are taught to follow a written ‘script’, in order to interact with others socially. Retrieved from: www.csld.org/HyperlexiaDefinition.htm.

27% …our current district has no autism unit so Sophie would be placed in a general education classroom with special education support for kindergarten. This is exactly what I had been hoping for her all along.

I wanted Sophie to have the opportunity to demonstrate what she was capable of to be given the chance to learn from her non-disabled peers and to have the same experiences any other child is given. If she couldn’t do it, then we would weigh our options. But I wholeheartedly believed that Sophie would be successful in kindergarten.

28% Sophie started off by “tasting” a few of her friends. However, it was determined pretty quickly by the school psychologist that this was a sensory issue, not Sophie intentionally harming others. There seemed to be a lot of evidence pointing toward a sensory integration disorder, which may have actually been a major issue all along. In fact, some of the experts on her team thought that it could be sensory integration disorder and not autism causing Sophie’s differences.

< My Thoughts > “Sophie started off by “tasting” a few of her friends.”

First, Reguero de Atiles, et al. (1997) caution parents that “Children biting other children is a common and difficult consequence of group child care.” They go on to say that there are four areas of represented research – Incidences of biting, reasons for biting, reactions to biting, and coping with biting behaviors. Some children, they believe appear to become overstimulated when other children are close. Incidences can be distinguished between basic immaturity and possible sensory integration dysfunction. Reasons for biting behavior can be due to frustration, lack of communication abilities, sensory reaction, a form of imitation, teething, or just curiosity. Some believe that it may be a natural response to frustration of demands, an attempt to make things happen more quickly, a reaction to discomfort or a simple lack of self-control.

As a teacher, in one of my first autism classes, I sat at a table with an eight-year-old student. I reached in front of him to pick up something from the table. As I did, he reached for me… pulling my underarm into his mouth. That bite mark was there for a month!

29% Sophie did so well in kindergarten. That year, people came up to me all the time and told me how amazed they were at the progress she had made.

I was amazed too. We had our struggles but eventually, she began to answer questions, tell stories, talk about her friends, and tell me what she did that day.

30% Her speech began to become more clear, though she was still confused about the tricker parts of speech, pronouns and what-not.

She became a different child. It was that year, when Sophie was in kindergarten, that I began to realize that she was going to make it.

60% Sometimes she is so upset she can’t process.

She hears what I am saying, but can’t process. It is not easy to live in our world when you have a language processing delay.

< My Thoughts > “…she is so upset she can’t process.”

Early signs of this may have been her biting incidences in Kindergarten. Just saying.

60% Sophie’s amazing teacher has figured out that phases like, “Sophie, cubby!” while pointing at her backpack usually get the right response.

There’s no amount of, “It’s okay,” or “It’ll be alright” that can get through all the jumbled up messages when you can’t understand the message and your brain is already full of words rolling around.

60% < My Thoughts > There’s no amount of, “It’s okay,” or “It’ll be alright” that can get through all the jumbled up messages when you can’t understand the message and your brain is already full of words rolling around.

If you have ever tried to learn a foreign language, you know the frustration of trying to hear the correct syllables joined together to understand what one word is, let alone a whole phrase uttered urgently. That’s what it must be like when one has a language processing delay.

This is where having a silly song to sing, or reciting the alphabet, or clapping to the hand jive can help the child break the looping response. Giving the child a chance to catch-up to what is happening in real time can help them learn to self-monitor their thoughts processes. Keeping them in the moment.

60% So, what do we do? A lot of times counting helps Sophie to calm down. Counting is consistent she knows what number I’m going to say next. She knows what it means. It’s predictable. It has a pattern. She likes it.

Today, she dropped her cookie on the floor. She cried and cried. I picked it up….and gave it to her. She started eating the cookie but continued to cry. Her brain still hadn’t processed that the event that had made her cry was over and she could be happy again… sometimes she is so upset she can’t process.

< My Thoughts > “Her brain still hadn’t processed that the event…”

Sonny has a seizure disorder, so it’s very difficult to know whether the tantrum he feels compelled to throw has to do with something in ‘real time’, or something that happened yesterday… or, a seizure manifestation. Hmmm…

60% …distractions work to a point. They worked better when she was younger. It takes longer now for her to move on to something else.

Sometimes I can “break a loop” if you will, by giving her something else to do.

68% I’ve been pushing her a lot lately, I feel like she isn’t living up to her potential. I know as a teacher, what it’s like to work with a child when you’re not sure what they are capable of. If you meet resistance, you’re more likely to stop or let up.

With Sophie, resistance is constant and relentless. Every time I push, I get ridiculous laughter, animal noises, howling, unintelligible jibber-jabber, or physical movement away from where we are working.

69% I have got to figure out a way to make her understand what she is supposed to do and find another way to respond when she is asked to complete a task because I am honestly worried about how other people may interpret this response.

If I find it odd and she is my child whom I love and understand better than anyone else in the world does, how does her teacher and classmates perceive this response?

I gently took her little face in my hands, and asked her to look at me. She looked down; she looked across the room; she looked anywhere but at my face.

I finally got her eyes to lock on mine for just a brief moment. …and in that moment, I think I may have seen past the disorder and actually glimpsed the Sophie I am trying so desperately to unlock.

< My Thoughts > “…in that moment, I think I may have seen past the disorder and actually glimpsed the Sophie I am trying so desperately to unlock.”

I have heard many parents say how important it is…”figuring out a way to understand her and have her understand me.” Farmer & Reupert (2013) talk about a program that helps parents understand how autism is “a different kind of normal”. This program is all about ‘understanding’. “Understanding the nature of autism and the communication, social, sensory, play, and thinking issues pertinent to ASD.” “Understanding the difficult behaviors and how to develop a practical set of strategies.” “Understanding how to decrease feelings of isolation and parental anxiety.” This program helps parents learn from those who already understand how autism may manifest in the child.” After completing the program, on parent shared, “I feel as if I now understand what it’s like in my son’s world. I now know more about what autism is.”

69% It was only for an instant, but her expression changed, and I thought “There it is! There is the ‘normal’ we have been searching for! And just as quickly as it appeared, it vanished. She scrunched up her face again, wrinkled her nose and said something I didn’t understand.

…all of our steps are baby-steps. But looking into her eyes for just those few seconds made me think that maybe someday she will be able to tell me what was going on in her head for all of these years when she just wasn’t able to tell me what she was thinking.

71% Sophie always struggles and rebels when she begins to develop new communication skills. I just keep reminding myself that we have come so far.

When her brain gets overloaded with this information, the silly sounds and laughter take over because she doesn’t know how to process it.

Without a diagnosis, without a cause or a proven therapy regiment, it is so difficult to know if we are moving in the right direction…

…if pushing her is really helping or if I shouldn’t be pushing her so hard. It’s all trial and error, learning as we go, hoping we make the right choices, and learning from our mistakes.

72% I took Sophie to Wal-Mart with me to do the grocery shopping today.

She is in rare form today and we had a really good time.

My favorite part was when she started “reading” the grocery list.

“Okay Mommy, we need some birds and a circus and some cereal and strawberries.”

She was being so cute…she was sitting there (in the cart) talking to a very sweet cashier.

“I bet if I told this woman that my child has autism, she would be shocked.”

There was nothing autistic about my girl today.

She was cute, she was making sense, she was being funny.

73% Perhaps we’re approaching normal.

77% We are going to continue to work to extinguish undesirable behavior, at least she isn’t biting, kicking, punching anyone. No one used the “A” word and no one told me she “couldn’t” or “she’ll never.”

The bottom line is, she’s continuing to make progress and her current placement is working. She now has an amazing classroom teacher and resource teacher and phenomenal speech teachers as well. Sophie loves her teachers and works for them because she has such a good relationship with them.

77% < My Thoughts > Sophie loves her teachers and works for them because she has such a good relationship with them.

As a teacher, and as a parent, establishing a relationship with a child on the spectrum is very challenging. Traditionally, many children will work for food, but will not perform because they want to please their teacher. This is another example of how different our kids are…one size does not fit all!

77% Sophie’s speech has come so far this year because of the hard work of these amazing women, it boggles my mind to think about all of the things Sophie says now that she couldn’t say a year ago. It’s hard to believe kindergarten will be over soon but I’m looking forward to next year.

< End of excerpts from, Part one: Our Journey So Far, by I.D. Johnson >

Farmer, J. & Rupert, A. (2013). Understanding Autism and Understanding My Child with Autism: An evaluation of a group parent education program in rural Australia. Australian Journal of Rural Health:21; 20-27.